Identification of Key Themes Related to Quality of Life in Cleft Lip and Palate Patients Paymon Sanati-Mehrizy, Nathaniel Villanueva MD, Rebecca Wu, Donna Eckstein, Roscoe Wasserburg, Peter J Taub MD. Division of Plastic and Reconstructive Surgery, Department of Surgery Icahn School of Medicine at Mount Sinai Plastic Surgery The Meeting 2014
Disclosures Nothing to disclose
Introduction § Most outcome measures in CLP are objective assessments § Limited subjective indicators of QoL in CLP 1 Goal: Identify major Generate: themes implicated Comprehensive, in the satisfaction valid subjective of CLP patients and questionnaire parents 3 Stage 1: Generation of a preliminary questionnaire from themes identified through Stage 1: Generation of a preliminary questionnaire from themes identified through focus groups and literature review + Pilot testing focus groups and literature review + Pilot testing Stage 2: Field testing of questionnaire revision and finalization of questionnaire Stage 2: Field testing of questionnaire revision and finalization of questionnaire Stage 3: Evaluation of questionnaire for reliability, validity, and strength Stage 3: Evaluation of questionnaire for reliability, validity, and strength
Staged Development Stage 1: Themes Preliminary Questionnaire + Pilot Testing Stage 2: Field Testing Revision and Finalization of Questionnaire Stage 3: Evaluation for Validity and Strength 4
Methods: conducting focus groups § Patients and their parents with cleft lip and/or palate invited to discuss satisfaction/QoL § Moderator-conducted focus groups - 60 minutes - Audio-recorded - Partially-structured § Audio recordings transcribed verbatim and de-identified 5
Methods: data analysis 2,3,4 Team-based reading to understanding themes Independent articulation of interviewee’s story Discussion-based Team-based creation of generalized concepts Transcript reading and verification of concepts Identification of preliminary codes Software Identification of trends of themes 5 6
Results Six major themes (codes) Five focus groups 1. Communication & were conducted Navigation of Care – 2 patient groups 2. Cosmesis – 2 parent groups 3. Financial Burden of – 1 provider group Medical Care 4. Functionality 5. Self-Esteem 6. Support Systems & Social Adjustment 7
Results: frequency of themes Communication/Navi Financial Burden Support Syst./ Social Adjust. Functionality Self-Esteem Cosmesis Totals gation Patient FG 1 10 5 3 7 13 41 Patient FG 2 6 8 1 3 4 22 Parent FG 1 6 3 2 11 Parent FG 2 10 8 3 8 5 6 44 Totals 32 21 3 15 15 25 8
Results: co-occurrence within text Communication/N Financial Burden "What's Most Functionality Syst./Social Self-Esteem Important" Cosmesis avigation Support Adjust. Totals "What's Most Important” 4 3 3 4 14 Communication/Navigation 1 1 1 1 4 Cosmesis 4 1 7 6 18 Financial Burden 3 1 4 Functionality 1 2 3 Self-Esteem 3 1 7 1 3 15 Support Syst./Social Adjust. 4 1 6 2 3 16 Totals 14 4 18 4 3 15 16 9
“ I was five, and these little kids were saying they didn’t want to play with me because I had this big red line on my face. And I was like ‘I can’t help it!’ They really didn’t understand, and they kept on calling me ugly and just really bad names. 10
Discussion Support System and Cosmesis Social Adjustment Functionality Self-Esteem Financial Quality Communication Burden of of Life & Navigation Medical Care 11
Future Directions § Creation of a preliminary questionnaire based on themes identified § Additional recruitment of patients and parents for more focus groups § Focus groups with providers for possible areas of discordance § Focus groups with non-native English speakers 12
References Eckstein DA, Wu RL, Akinbiyi T, Silver L, Taub PJ. Measuring quality of life in cleft lip 1. and palate patients: currently available patient-reported outcomes measures. Plast Reconstr Surg. 2011; 128:518e-526e. Dierckx de Casterle B, Gastmans C, Bryon E, Denier Y. QUAGOL: A guide for 2. qualitative data analysis. Int J Nurs Stud. 2012; 49:360-371. Ruddy KJ, Greaney ML, Sprunck-Harrild K, Meyer ME, Emmons KM, Partridge AH. 3. Young Women with Breast Cancer: A Focus Group Study of Unmet Needs. J Adolesc Young Adult Oncol. 2013; 2(4): 153-160. Cano SJ, Klassen A, Pusic AL. The Science behind Quality-of-Life Measurement: A 4. Primer for Plastic Surgeons. Plast Reconstr Surg. 2009; 123:98e-106e. Dedoose by SocioCultural Research Consultants, LLC. Manhattan Beach California 5. 13
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